Bowl-a-thon raises awareness of Batten Disease

Advance photo/Jamie LeeAt the Bowl-A-Thon at Rab’s Country Lanes are, front from the left, Lauren Surrey, 15, and Michele Surrey, 20, who both suffer from Batten Disease. Standing, from the left, are, organizers Gerard LoVerde; Greg Cicero; Fred Surrey; Maria Cicero; Karen Ribaudo; Janet Surrey; Vicki LoVerde, and Kristina LoVerde.DONGAN HILLS -- Whether it found a few pins or slid into the gutter, each bowling ball tossed down the alley this past Saturday in Dongan Hills was most certainly a strike.

The Metro NY/NJ Chapter of the Batten Disease Support and Research Association (BDSRA) held its 9th annual Bowl-A-Thon this past weekend at Rab’s Country Lanes, drawing 136 bowlers from across the Island.

“There has been a growing awareness of the disease, which is what the organization is really striving to do,” said Tottenville resident and event organizer Gerard LoVerde, who said that more than $19,000 had already come in and almost a $1,000 more should be on its way. “And support for it has grown over the years, both through family and friends and through local businesses.”

Sponsored by the New York State Society of Certified Public Accountants (NYSSCPA), the event is directly related to the condition of a pair of Prince’s Bay sisters — Michele, 20, and Lauren, 15, Surrey.

The Surrey sisters have the juvenile form — and most common type — of Batten disease, a rare, inherited, fatal neurodegenerative disease that can occur at three stages in childhood: infancy, late-infancy and juvenile; occasionally it appears in adulthood.

In the juvenile form, signs of the disease usually appear between the ages of 5 and 10 and may be subtle, such as personality and behavioral changes, slow learning, clumsiness or more apparent vision problems and seizures in a formerly healthy child.

Advance photo/Jamie LeeThe Bowl-a-Thon drew 136 bowlers from across Staten Island and raised money for the Batten Disease Support and Research Association (BDSRA).Over time, affected children suffer mental impairment, worsening seizures and progressive loss of sight and motor skills, eventually becoming blind, bedridden, demented and unable to communicate. The disease is usually fatal by late teens or early 20s.

Since the diagnosis, the father of the girls, Fred Surrey, has been advocating for awareness and research for the incurable condition. He co-founded the Metro NY/NJ Chapter, for which he currently serves as vice president.

In 2001, his brother-in-law and then-member of the NYSSCPA, John Rissman, approached the Surreys about allowing the annual Bowl-A-Thon, which had been benefiting various causes since the late 1990s, to fund the BDSRA.

The partnership took off, and the two organizations have been linked annually ever since.

“The Bowl-A-Thon was a great success and raised needed money for research and an increased awareness of this deadly disease,” said Rissman in a thank-you to the NYSSCPA. “Since there is currently no cure for Batten Disease, all that Batten families have to cling to is the hope that researchers will find a treatment to slow the progression of the disease or a cure to halt its progression.”

This year’s event saw more than 60 local businesses and private families sponsor specific lanes, and a new partnership with the Staten Island Business Friends brought in more than 40 additional bowlers.

“To most of these people, it’s a new thing,” said LoVerde, a member of the NYSSCPA for more than 20 years. “But the more the information gets out there, through Fred’s efforts and through events like the Bowl-A-Thon, the more people understand what it is and want to help.”